Siblings With Special Needs Change Childhood

Guests

We often hear about children with intellectual disabilities who face challenges as they grow into adulthood. Less often, we hear about their siblings. They often experience a unique set of emotions, responsibilities and opportunities when it comes to their siblings with special needs.

This is TALK OF THE NATION. I'm Neal Conan in Washington. Anyone with brothers or sisters knows about the teasing, the fights and the betrayals that can come along with solidarity and the love. But all of that changes when one sibling has an intellectual disability like Down's syndrome or autism.

A lot of emphasis is often placed on the child with special needs while their brothers and sisters can feel left out, guilty, resentful, responsible and embarrassed. Of course, the sibling's relationship can last a lifetime.

Tell us your story. If you have a sibling with an intellectual disability, our phone number is 800-989-8255. Email talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Later in the program, we'll play back excerpts from foreign policy speeches today by President Obama and Republican presidential candidate Mitt Romney.

But first, siblings and intellectual disability. Dr. Ranit Mishori is a family practitioner here in Washington. She's also on the faculty at Georgetown University School of Medicine and joins us here in Studio 3A. Nice to have you back on TALK OF THE NATION.

DR. RANIT MISHORI: Thank you, Neal, thanks for having me.

CONAN: And I know this is not just a professional story, this is a personal story for you.

MISHORI: It is a personal story that took me many years to tell and not always a comfortable situation to be in to have to talk about that.

CONAN: What was it like being a big sister to your brother?

MISHORI: Well, it wasn't easy, and that's why I wanted to write the story that I published in the Washington Post a few weeks ago because it's not something we talk about. It's not so nice to talk about resentment and anger and shame and embarrassment. It's better to say oh, this was an amazing experience, I really helped a lot, or having a brother or sister with a disability helped me see the light or see things differently.

But really when I talk to other siblings, it really wasn't so great most of the time.

CONAN: There was one episode in particular that you had a hard time fessing up to.

MISHORI: Yes, it was - I was a teenager. I was probably about 16 or 17. And I was going on a date with a guy I really liked. And he was picking me up from home. And I did not want him to see my brother, I have a younger brother with autism, and I locked up - I locked my brother up in a room so nobody could see him.

And I'm very embarrassed to say that, and I'm sure I'll be judged harshly by some of the listeners, but that's the reality. I was just not ready to say that my brother is not me.

CONAN: And those range of emotions, the feeling resentful and then feeling guilty about feeling resentful, feeling responsible and then maybe overcompensating when you're being responsible and resentful for being - this goes back and forth.

MISHORI: Right, right, it's a cycle, and you don't know when to be angry at your parents or when to be angry at your brother or sister and when to be angry at yourself. So it's sort of this thing that percolates, and it can percolate for years and years unless you either get some help or sit down and try to realize that, you know, there are worse things in life.

CONAN: And does it matter whether you're the older sibling or the younger sibling?

MISHORI: From some of the research that I've read, it does matter. In some cases, younger siblings don't know anything else. So this is the world they were born into. With older siblings, sometimes it's difficult, depending on the gap between the siblings. You - if you're an older sibling, you're used to being there, maybe alone with your parents, have all the attention, and then somebody else comes, and it usually is a crisis when any brother or sister come along...

CONAN: Sure, yeah.

MISHORI: But you can imagine if that brother or sister has a serious disability.

CONAN: Yeah, I can understand that. And has there been a lot of research on how this affects siblings?

MISHORI: No, I think most of the research is about the actual - the people who are affected by it directly, the siblings themselves, but not what people in the field want to call the typical siblings. So most of the studies are about the disabled ones. There are some studies, but it's hard to say. They are very different from one another. So there are no conclusive recommendations.

CONAN: And are there support systems? Did you talk with other kids who were in your same situation when you were growing up?

MISHORI: At the time no. I grew up in the '60s and early '70s. So there was nothing much there, not a lot of infrastructure. And I understand now there are sib groups and sib shops, and I know one of your guests is going to talk about that.

CONAN: And I was just about to introduce him, so - in a stylish segue. One way to help siblings of people with intellectual disabilities, connect them with other people in the situation, they can pick up important information and, well, express some of those feelings we're talking about. Don Meyer is the director of the Sibling Support Project, a national effort that does just that, among other things to help the millions of brothers and sisters with special health, mental health and developmental needs. He's with us from station, member station WKUOW in Seattle. Nice to have you with us today.

DON MEYER: It's great to be here, Neal.

CONAN: And you met one woman recently in South Carolina at one of your events who illustrates just how siblings can be affected in these cases.

MEYER: Oh yeah, this sister shared with an audience that her parents did not attend her high school graduation when, can you believe this, she was the valedictorian because they didn't feel like they could leave her brother with other - anybody else.

And so I'm forever begging parents to get some good respite for their children who have special needs so they can spend one-one-one with their typically developing kids.

CONAN: And so it's - that's - you know that they have to make that decision, yet you can't help but feel angry about it.

MEYER: Oh yeah, yeah. Well, you know, there's a whole gamut of feelings that brothers and sisters have, and Ranit covered a lot of them, as did you. But either they're things like embarrassment and guilt and isolation and a need for information and resentment and pressure to achieve.

But, you know, the sibling relationship, forget disabilities for a moment, it's sort of the working definition of ambivalence. You know, siblings, you know, their relationship is characterized by hugging and slugging in the same 15-monute period. And when you add the dimension of the disability to it, it's like you've sprinkled monosodium glutamate on the relationship.

The highs are higher, and the lows are lower. On one hand you'll have a sibling who will ascribe the personal problems that they have in their life because they grew up with a brother or sister with a disability, but you're also more likely to have people who say, you know, my brother taught me the meaning of unconditional love.

So it's, you know, that same ambivalence is there, but again the highs are higher and the lows are lower.

CONAN: And Ranit Mishori, Dr. Mishori, you in your piece described a young woman who developed a tremendous sense of humor and patience because of her brother, the incident with the mop, I think.

MISHORI: Yes, I think you have to be patient with kids with disabilities, regardless of whether you're the parent or the sibling. I think humor is a very, very wonderful way of dealing with it because there are humorous moments. That's how some of the incidents in my family, how we dealt with it. So I think humor is a wonderful way.

But of course there are only certain points in time when you can use humor, and the other times it's not there. So it's a process. It's a long and complex process.

CONAN: We want to hear from those of you who grew up as the brother or sister of someone with an intellectual disability, give us a call, 800-989-8255. Email talk@npr.org. Our guests again are Dr. Ranit Mishori, who's a family physician here in Washington and an associate professor in the Department of Family Medicine at Georgetown University School of Medicine. She wrote a piece called "Autism Can Have Large Effects, Good and Bad, On a Disabled Child's Siblings," and she mentioned that was in the Washington Post.

Also with us, Don Meyer, director of the Sibling Support Project, a national effort dedicated to the interests of over a million brothers and sisters of - excuse me, I lost that number, six million brothers and sisters of people with special health, mental health and developmental needs.

And let's see if we can get a caller on the line. This is Dan(ph), Dan's on the line with us from Lawrence, Kansas.

DAN: Hey, how are you doing? Thanks for having me.

CONAN: Good, go ahead, please.

DAN: Good. Well, my situation was different. When my sister was born, she was six weeks premature, and they put her into an oxygen tent and mixed the oxygen incorrectly, and so she became brain damaged from that event and had many developmental disabilities and problems in the rest of her life.

My situation with that was that my - I always then in my life had a concern about my parents having to deal with her and take care of her for the rest of their lives. And so just that was probably the biggest concern on my mind over the decades was what my parents were going to be going through at the twilight of their life.

CONAN: And was there a question in your mind what was going to happen after your parents died?

DAN: That also, yes, remained something that I had to think about a lot. And the mixed emotions of all of this is that when my sister turned 41, she came down with pancreatic cancer and passed away in a year. And so we had the four decades together, and all of my concerns for my parents and for the ongoing care went away at that point.

And so you have the sadness of the loss to the family, but there's also the relief, and the mixed emotions are really something.

CONAN: The relief and then the guilt over the relief and yeah, I can get that.

DAN: Exactly.

CONAN: I wonder, Don Meyer, we think about the growing-up situation, yes the date coming over, but it's often - it's also the situation of, well, decades later.

MEYER: Yeah, brothers and sisters are going to have the longest lasting relationship with that family member who has special needs. They will be in the lines of that person longer than any service provider will but even longer than parents. This is a relationship easily in excess of 65 years so that after the best special education program is a distant memory, and the parents are no longer around to look after their fears, it's going to be the brothers and sisters who will assure that that person with - the family member with a disability leads a dignified life, living and working in the community.

So there's a whole host of adult sibling issues. And I think parents are sometimes surprised to learn at what an early age brothers and sisters are thinking about life beyond mom and dad. And I often hear from kids who are, you know, 10, 11, 12 years old thinking about, you know, how they, in the days to come, they are going to assume a significant role in the lives of their brothers and sisters.

CONAN: Dr. Mishori, was this something you thought about?

MISHORI: Yes, certainly that's something that you start thinking about very early because, you know, you're going to be there, just like Don was saying, and as you grow older, and as your sibling grows older, it becomes more of a reality. And of course there are no easy solutions.

Talking about it as early as possible is one thing, and delineating exactly what roles are expected of you and what are some financial resources to take care of a sibling. These are all conversations that need to take place years and years before you're faced with the reality of it.

CONAN: And how's your brother doing?

MISHORI: He's in a home right now. Again, it's not easy. And I - this is something that definitely consumes me, thinking about what's going to happen. He's in his early 40s, and my parents are not getting any younger. So that's certainly something that weights in very heavily.

CONAN: Dan, thanks very much for the call.

DAN: Oh, thanks for having me.

CONAN: We're talking about siblings of those with intellectual disabilities, autism maybe or Down's syndrome. If you have a sibling with an intellectual disability, call and tell us your story, 800-989-8255. Email is talk@npr.org. You can also join the conversation on our website. Go to npr.org, and click on TALK OF THE NATION. I'm Neal Conan. Stay with us. It's the TALK OF THE NATION from NPR News.

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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. We often hear about children with intellectual disabilities and the challenges they and their parents face. Less often do we hear about their brothers and sisters, siblings who face their own challenges and emotions and struggles growing up in the shadow of intellectual disability.

If you have a sibling with an intellectual disability, call and tell us your story, 800-989-8255. You can also email us, talk@npr.org. And you can join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Dr. Ranit Mishori is a family practitioner here in Washington. She shared her own experience with this in a piece that ran earlier this month in the Washington Post. We've posted a link to that story at our website. Again, that's npr.org. Don Meyer directs the Sibling Support Project, a national effort dedicated to helping brothers and sisters of people with special health, mental health and developmental needs.

And I wanted to read this email we got from Sharon - oh, excuse me, Shannon(ph) in St. Louis: I grew up with an older brother who had severe ADD, ADHD, Tourette's, as well as other disabilities. I was acutely aware that there was something different about him from a very young age, and this became more prevalent in high school, where he was incessantly picked on. I even remember meeting with a family therapist once to help his Tourette's.

Because of this, I think I was embarrassed and ashamed to introduce friends and boyfriends to him. I went so far as to point out once to a new boyfriend: My brother and I were both adopted and not blood-related. And for that I am now embarrassed. He had a constant struggle during his life to make and retain friends, jobs and get a quality education, and even though he was immensely intelligent, after he passed away in a car accident just two years ago, only now am I able to see how unfair it was for me to pretend I was the favorite because he had disabilities or even treat him differently for that.

Our relationship was never a good one, but I often wonder how it would have been different. And that's a reminder, Dr. Mishori, there are people all over the spectrum. It's not just severe autism. It's like Shannon's brother.

MISHORI: Yes, and it's not just - it could be mental retardation, Down's syndrome, as the other caller, people with - who were hurt at birth. So there's a whole array of kids with - who are disabled and their siblings. So it doesn't really - almost it doesn't matter what the condition is affecting the disabled brother, but it's how you deal with it and how your family handles it.

CONAN: Let's go next to Teresa(ph), Teresa with us from Tucson.

TERESA: Hello.

CONAN: Hi, you're on the air, Teresa. Go ahead, please.

TERESA: Yes, my younger brother, he's three-and-a-half years younger than I am, and he was developmentally disabled. And when he was little, it took him a long time to learn how to talk. And one of the things that I could do as like a little kid was like for some reason I could understand what he was trying to tell my mom.

You know, as we grew up, I can relate too to being kind of ashamed of my brother but also kind of missing out on a brother-sister relationship like my friends had. And that was difficult too. You know, and a lot of attention does go to the child. I can remember coming home from school a lot of times, and my mom, you know, was somewhere with my brother for some sort of an appointment, and this went on and on for like a couple of school years this way.

CONAN: And you went through that cycle of resentment and guilt?

TERESA: Kind of just feeling left out, you know, kind of like, you know, that - I don't know. And - I don't know, it's kind of hard to describe, but yeah, just kind of feeling left out and maybe not as important. And you know, I cared about my brother, and I wanted him to be - I wanted him to be normal. But on the other hand, I look back as an adult, and I realize the things that my brother taught me in his own way, which was to be more accepting of people, to be more sensitive to people's needs - excuse me, their needs.

And you know, my brother was killed in an accident, and at his funeral, usually when someone with developmental disability has a memorial service, it's just a handful of people there, and the entire church building was full. People came from out of state on a Monday night for this, completely full, just because my brother had touched them in some way.

CONAN: Teresa, thanks very much, and I'm sorry for your loss.

TERESA: Thank you.

CONAN: And it's interesting, Don Meyer, as you go through this, these cycles of feeling, there is also a - there are also examples of siblings who overcompensate, feel responsible to be no trouble at all to their parents and to be the one who's the achiever in the family.

MEYER: Yes, some brothers and sisters find themselves in the good kid role, the one who's going to make everything right, the one who's going to balance the scales. And for some sibs that I've talked to, they say, well, that's how I got attention in my family, is that I did well in school.

And other sibs say, you know, my parents had enough heartache. I didn't need - you know, with my brother. They didn't need my worries as well. And often you see sibs, they go on to be very conscientious people and good students, and there's certainly nothing wrong with that, but it's - I guess it's problematic when they're neurotic achievers, or they never bring home any bad news. You only get good news from them.

And, you know, if that happened to one of my kids, the message I would want to give them is that, you know, yes, we have high expectations for you like we have high expectations for your brother who has special needs, and we have high expectations for ourselves. But you know what? None of us are perfect, and being in a family is to be there for each other in good times and not-so-good times.

CONAN: Neurotic achiever, Dr. Mishori?

MISHORI: I guess guilty as charged.

(LAUGHTER)

MISHORI: Certainly there are moments that I'm not so proud of and I'm sure my parents were not so proud of me at those times. But certainly there's a sense that, you know, he's never going to be the athlete, so I'm going to have to be the athlete. He's never going to be the top student, so I have to be the top student. He's never going to, you know, make enough money or have a life that my parents would be proud of, so it's left up to me and my younger sister, to some extent.

So yes, there's a lot that - kids that I've talked to and other siblings, including thinking about it later on myself, we take on a lot in order to make sure that the parents have some glimmer of hope.

CONAN: Let's get another caller in. Let's go to Dan, Dan with us from New York.

DAN: Hi, how are you doing?

CONAN: Good, thanks.

DAN: I just want to say that I never really had like the negative aspects. My younger brother has autism, and he's seven years younger than me, and my older brother is 10 years older than him. So there wasn't really that close of an age as to where we would get jealous, that he got, you know, more stuff of Christmas or, you know, things like that. So we kind of bypassed all that.

And, you know, he's actually just enriched and made all of our lives better, in a way, making us more honest people because of the way he sees the world. You know, he just, he always says what's on his mind. Like he has no filter, you know what I mean? And it's great, actually, and it's - it's not like a good thing that he's autistic, but in a way he's made all of us better people for it.

CONAN: Don Meyer, I guess that points out again, we can't - everybody's situation is different, and some good things can come of this.

MEYER: Oh, without a doubt. You know, to focus solely on the problematic aspect is only, you know, one side of the coin. You know, there's - you know, we see sibs who are marvelously mature. You see a lot of insight into the human condition. You see people being tolerant of people who are somehow perceived as different.

There's inspiration that they get from their brothers and sisters. There's an appreciation for things that other people take for granted. There's a tremendous pride, as your caller just expressed, and there's amazing loyalty that you see from sibs. So there are things - and again, for some sibs it's more one way, in others it's more the other way, but for most sibs it's kind of a mixed bag.

CONAN: Dan, thanks very much.

MEYER: Hey, thank you.

CONAN: Here's an email from Elizabeth in Salt Lake City: My parents made the difficult, albeit doctor-advised decision, to relinquish custody of my older, intellectually challenged brother, and he did not live in our home as I was growing up. While I understand their decision was made with my brother's specialized health care needs in mind, it was also due to their desire to provide any future unborn children, me and my younger brother, with a normal childhood.

Now in my 30s, I struggle with my parents' decision to remove my older brother from my home, and I feel a sense of guilt that someone else has always taken care of him while the rest of our family has gone on with our lives unencumbered by my brother's special needs. I think my parents made the right decision for them, but my role, non-role, in my brother's life continues to confuse me. Boy, this isn't easy.

Another email, this one from Katrina(ph) in Cedar Rapids: I have an autistic brother who's 14 months older than me. He's now 37, and I'm 36. My brother required additional attention, but at the same time the importance of this attention was understood, well understood, by my sister and I. As a result, my older sister and I were protective of him growing up, which was probably worse for him than any embarrassment I might have - than any embarrassment I might have felt about him.

He now makes up for it by being overprotective of me. And there's another thing that I wanted to get to, Dr. Mishori, that you wrote about, and that is safety. Sometimes people with severe autism, like your brother, can be dangerous.

MISHORI: Absolutely. And, again, it's not - it doesn't - not all autistic kids are aggressive or violent, but my brother was, and it certainly wasn't fun. And I wrote in the article about an incident when he bit me on the face, and the next morning was our school picture day. And I still have that picture. But I went to school, and I have to say they asked me - the teacher asked me, what happened? I said, oh, the cat scratched me. Clearly, there are teeth marks there.

So it wasn't the most fun, you know, to say the least. So there was a moment - there's an element of embarrassment and shame and also the actual fear of, you know, a young child being attacked by their brother or sister.

So that was certainly there, but, you know, it's not - and that - it's not the same situation for everybody. And my parents were trying to be very protective and knew when to take him away, but it wasn't possible all the time.

CONAN: And, Don Meyer, I wanted to ask you about a situation that I know you've dealt with, and that is kids who - I grew up with brothers and sisters. There's constant teasing. There's constant little cruelty sometimes. Sometimes you can be betrayed by your siblings in hurtful ways. What effect does that have when one of them is intellectually disabled?

MEYER: Yeah, kids can be pretty cruel. And, you know, I run these programs called Sibshops, and I train people on how to start these things called Sibshops. They're peer support and education programs for school-age brothers and sisters. And they talk about it there, and it's great for them to have a forum where they can talk about how other kids have been cruel and thoughtless.

And I've been doing - I've worked with sibs for a long time now, and it's not that I don't hear kids complain about other kids being cruel, but I don't hear about it nearly as much as I used to. And I think that has everything to do with the movement towards community life for kids who have disabilities. Rather than going to special schools, they're now at neighborhood schools. They're more integrated into the mainstream of life.

CONAN: Let's go to Ilea(ph), Ilea with us from Bolinas in California.

ILEA: Hi.

CONAN: You're on the air. Go ahead.

ILEA: Hi. My experience - I was glad to hear the person who had a positive experience because my sister was born in '47, two years older than me, and there were just no services at that time. And my parents were real pioneers of pulling together services for people, but they made it normal. And my sister went everywhere with us and all my friends and all my high school dates and all the parties we had at my house. She was just there and included.

And I learned very young that I stood up for her when people were mean because I valued her. And throughout my life - she just died this year at 64. And I feel enriched. Maybe I became more of a caregiver to my family because I saw so much kindness in my family.

But I just wanted to say that there's really strong, positive experiences. And she was gentle, and she wasn't - and she was cheerful, and she was patient, so it was easy to take care of her in that way. But it's very enriching, and I know a lot of people who feel that way.

CONAN: Ilea, thank you very much for sharing that. It's important to us. Appreciate it.

ILEA: OK. Bye.

CONAN: We're talking with Dr. Ranit Mishori, a family physician practicing here in Washington, an associate professor in the Department of Family Medicine at Georgetown University School of Medicine. Also with us, Don Meyer, director of the Sibling Support Project. You're listening to TALK OF THE NATION from NPR News.

Keira(ph) is on the line with us from Allendale, Michigan.

KEIRA: Hi there. I just wanted to talk about - I have a wonderful brother who has Angelman syndrome. And I think that it's really important that my mom was able to find - she's a single mother, and she's been able to find some really wonderful respite care so that she is capable of taking some time for herself and time to spend with me and my daughter. And I just am really thankful that that type of program is out there for her and that she was guided into that area.

CONAN: Forgive me. I'm not familiar with Angelman syndrome.

KEIRA: It's - it affects chromosomes. Basically, he kind of functions on a level of a 3-year-old. So his speech is very limited. You know, all of his care needs to be provided for him. It's a pretty significant disability, but he's really enriched our lives, and he is very involved. But when my mother needs to spend some time by herself and regroup, there are a lot of options out there.

CONAN: And will you be the primary caregiver when the day comes?

KEIRA: You know, that has not been discussed thoroughly. She - my mom is not incredibly willing to talk about that at this time. She is a wonderful woman who takes fantastic care of him as of right now, so...

CONAN: I can understand that it's sensitive. I think it's also really important to talk about it.

KEIRA: It is. It is.

CONAN: All right. And your brother is doing well?

KEIRA: He's doing very well, yup. Yup. At home. Yeah.

CONAN: OK. All right. Keira, thanks very much, and good luck.

KEIRA: Thank you.

CONAN: And in terms of those conversations, Don Meyer, they're really important.

MEYER: Yeah. Neal, I'm afraid what your caller said is an oft-told tale. I'm forever meeting adults who are - who have no idea what their parents' wishes are. And they've tried to bring it up with their moms and dads, and their parents just don't want to go there. It's understandable why they wouldn't want to talk about it, but the reality is is that these brothers and sisters are going to be involved, and they would be wise to start talking about it sooner rather than later.

You know, we talked about guilt a little bit, but I've had many sibs who have found themselves in a situation where their parents have never wanted to talk about the future. And, you know, they had, let's say, a child with Down syndrome, and because they had a son or a daughter with Down syndrome, they thought they were going to outlive that child. And guess what? That doesn't happen. Dad died last year at age 80. Mom's now 78; still is unwilling to talk about, you know, what's going to happen with brother Bill in the days to come, and then she gets diagnosed with something serious.

And then she goes to - it's usually the daughter, the oldest daughter and says, you know, tell me you will take Bill into your house in the days to come. And this daughter having to say to her mother at the end of her life, you know, mom, I don't think that's such a good idea. I will always look after Bill's affairs, but, you know, I can't have him live with me. We need to think of another way. That's a huge opportunity for guilt and the real reason why these kind of things should be discussed sooner rather than later.

CONAN: Don Meyer, thanks very much for your time today.

MEYER: My pleasure.

CONAN: Don Meyer is director of the Sibling Support Project. He joined us from member stations KUOW in Seattle. And Dr. Ranit Mishori was here with us in 3A. Thanks very much for sharing your story.

MISHORI: Thank you. Thanks for having me.

CONAN: Coming up, dueling speeches in New York City by President Obama and his Republican challenger, Mitt Romney. We'll play back substantial excerpts of what both had to say on foreign policy. Stay with us. It's TALK OF THE NATION from NPR News.

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